Eye complaints, that’s where it started. Amari’s eyes grew larger. When exactly it started, we don’t know. On a Monday we had our first contact with the doctor. On the Thursday evening in the same week we received the results. Amari has neuroblastoma, a form of childhood cancer. The swelling that made his eyes bigger is the metastasis.
I don’t remember what was said. I felt like I was in a movie scene where everything was blurry in front of my eyes and the sounds around me became dull. I see the pediatrician talking, but I have no idea what she’s saying. My partner was sitting across from me, he started crying. I also started crying, but I have no idea why. I hear the Netherlands and I say no, that is not possible. Utrecht?! I’ve never been there. We have Sephina our daughter of 4 years, our house, work.. No! The pediatrician said, “I’m sorry, but there’s no other way. I want you to leave as soon as possible. That will be Saturday. You need to think about what you want to do with your daughter. Take her with you or leave her with family”.
My partner and I immediately knew what we wanted, Sephina had to come along. Since pregnancy and after birth, Sephina has been very involved with Amari. She loves to cuddle with him, give kisses, help to bathe him and comb his hairs. In addition, the pediatrician could not tell how long we would stay away. We have family who could take care of her, but we wanted to have her with us.
We are a family of 4 who have been living in Curaçao since the end of 2016 (after the birth of our daughter). As parents we work full-time and we have mainly been busy decorating our house. At the time we got the bad news, we didn’t have the money to pay for the ticket for Sephina. The nurse who was on evening duty at the time told us that she could put us in touch with Ronald McDonald House Charities Curaçao. They might be able to help us.
That’s what they did. In the morning we had a conversation with a volunteer who gathered all the information and then called around for us. Amari was 5 months old at the time, he didn’t have a passport yet. RMHC had arranged for a photographer to visit the hospital to take passport photos of him. They also arranged for us to pick up an emergency passport for him. We would leave for the Netherlands in the middle of winter. We did not have winter clothes for Sephina. RMHC collected clothes for her in a short time.
On the day of our flight, two days after the result, a volunteer from RMHC was waiting for us at Hato. She helped with check-in and escorted us to our seat on the plane. When we arrived at the Princess Máxima Center in Utrecht, we were immediately admitted and a few days later the treatment started. Amari received chemotherapy, he was operated, received stem cell transplantation, radiation and finally immunotherapy.
It was tough, but we had each other. Sephina was always there, even during the hospitalizations. On school days she went to school in Utrecht. After school she was allowed to go to the shelter for siblings in the hospital during the admissions. This was part of the Ronald McDonald house in Utrecht.
We are very happy that we took Sephina with us. She saw and understood what we were going through as a family. All the ivs, strings and even hair loss did not matter to her. She was always ready to cuddle, play and dance with her brother. We laughed together, cried together when things weren’t going so well, but also laughed together when things got better. She doesn’t have traumas. She likes to talk about how much fun she had in PMC.
The treatment lasted 16 months. On May 3, 2022, we received the good news that all the results of Amari’s latest studies were good. There is nothing left on the scans or in the bones. Amari finished the treatment, we could go home again. RMHC was again ready to help us with Sephina’s flight ticket.
And now? Amari gets check-ups every three months through the pediatrician. We as a family have to start up again. Sephina is allowed to start again at her old school. Amari has to go to the shelter. We were able to keep our house, with help. We don’t have a car anymore, that’s what we’re looking for now. Once that is arranged, we can start working again.
It is important to keep families together, even during illness. The sick child sees and feels the love around him, he or she can receive the strength to continue. As a family, we are so grateful to RMHC for everything they have done for us. The volunteers each have their own story, but they are all ready to think along and help.
Masha danki Ronald McDonald House Charities Curaçao!
